Welcome. I live with Schizoaffective Disorder, formerly diagnosed as Schizophrenia. This blog, created in 2005, is about what goes on inside my mind. It is about coping, living, and advocacy. You will find information on what psychosis, delusional thoughts, and suicidality are like, by a person who has had those experiences. Most of all, you will find a story of hope. If you have a mental illness, know you are not alone.

I don't know exactly when the current troubles started. I thought I was doing okay. This summer, I cleaned my apartment really well, and had my mom and my sister over for dinner. My case manager said, "I've never seen your place look this good before!" I decorated, a lot. That was around June. I was doing well in June, and July. Although, for the past year, I've had major trouble sleeping, and especially since this past spring, when I went off Seroquel after having been tapered off it for a long time.

Seroquel made me sleep, and I haven't slept well since I started going off that drug. I wanted to go off that drug. It can cause diabetes, and I became prediabetic on it. Right now, I wish I had it back. I'd take it again. I want to right now. That's how bad things have gotten.

I started Latuda a couple months ago. It's a new antipsychotic. Not a lot of research has been done on it, and I read that no research has shown it's efficacy for usage after six weeks. I have deteriorated while on Latuda, which may not be because of the medication, but the medication certainly does not appear to be helping matters. This medication seems to not work for me. It is supposed to help with cognitive problems, and even has been said to be beneficial for the negative symptoms of the Schizophrenia side of Schizoaffective Disorder. Right now I would say, I see no evidence of that.

I could be wrong. I could have somehow gotten really psychotic regardless of whether I was on Latuda, and it could be a lot worse if I wasn't on Latuda. I don't really have any way of knowing.

But this much I know: my brain is not functioning. Most of the time, most of the day, I couldn't write this post well. I am having a moment of clarity, when I can, at least, write. But I am not well. I thought it was depression, so I saw my psychiatrist last week and told him that. He increased my antidepressant. He didn't want to prescribe anything else new at the same time, so nothing was changed with my sleep medication, even though I mentioned that I'd be willing to take Seroquel again, or even Thorazine, just to be able to sleep. But while I was talking to him, I was not thinking of all the things that were really going wrong, and I failed to mention them. I failed to understand that it was more than depression. Depression alone is a bear in itself. But, in my experience, psychosis is more destructive overall to my brain and my ability to function.

I think I am experiencing psychosis now. I hate to even say this, because in my mind I associate psychosis with the times in my life when I was not properly diagnosed or medicated, and was ending up homeless, living in shelters, and unable to get through a day without total mental torment 24/7. Usually, this involved a lot of deep delusions, and auditory hallucinations, what they call the "positive symptoms" of Schizophrenia and Schizoaffective Disorder. The positive ones are the things that happen that aren't supposed to happen. "Negative symptoms" are the things that are supposed to happen but don't happen. Like being able to think. It's hard to get through life when you can't think well.

I sort of stopped functioning, and it started weeks ago. I stopped doing dishes. I just stopped. It became entirely too complicated in my mind to tackle the dishes. I lack energy for such basic tasks, and what's worse, I'm overwhelmed, completely, by them. I stopped cleaning. I stopped doing laundry. It is taking every ounce of concentration, energy, and will power that I can muster to get through the most important things - going to work, and not losing my job, going to college, keeping up with my classes, and doing my internship. This has become extremely difficult to do. I missed two days of work because I was lying, inert, in my bed, immobile all day, just doing nothing, not really thinking. Just lying there. I have missed several days of my internship.

I'm not suicidal. I don't want to die. I'm not even sad. I'm not crying. I'm not just depressed, in that sense. I am more just incapacitated. I cannot watch TV much of the time because it takes too much concentration to follow a show. I cannot read much without extreme effort, and sometimes, not even then. It has taken me seven hours tonight to write a five-page paper, which would normally take me two hours, and I have written something that is not nearly as good as what I could do normally, and I am still not done with it. A week and a half ago, I turned in a paper for a class that I thought I had written pretty well despite doing it right before it was due. It turned out that I wrote the "reflection paper" which was supposed to be about what we discussed in class and what we read in our textbooks, on a completely different class using the wrong textbook. Since I have the same professors for both classes, she understood what I had done. She emailed to tell me, but since I had forgotten to check my college email for a few days, I didn't realize it until the paper was nearly a week late. Then I rewrote it. I did not know what to say to explain my obvious brain problem, other than the truth, so I wrote to her that my only explanation for this was that I have Schizoaffective Disorder and sometimes cognitive impairments which is why I have notetakers in my classes. She gave me an A on my paper. She is very kind.

I don't remember the last time I got my mail. I have gone weeks without grocery shopping. Eating nothing but fast food is a huge waste of money, but I am barely able to function enough to get through the days. I am unable to handle the overwhelming confusion that entails when I walk into a store now. I am afraid to go into large stores, like Walmart, at all, because they would be too complicated. I stare at items on shelves with no idea what to pick, what I am looking for, what I am doing there. I cannot make decisions. I cannot understand basic things. I get confused when people are talking to me, about what exactly they're saying and what they mean by it. I get confused all the time. Everything is too complicated.

My home is a disaster, and my car is a disaster, and I am completely disorganized. I do not remember the last time I took a shower, but I guess it was a few days ago. I wear worn clothes because doing the laundry overwhelms me. I don't do the dishes even though the sink smells badly, and there are little flies starting to fly around. I missed a meeting of the feminist organization I'm in because I totally forgot about it, even though I myself advertised the meeting in numerous places, and then I missed the annual NAMI banquet which I was kindly given a ticket to attend, because I couldn't handle figuring out how to get dressed up, go there, and act like I was okay enough to be around people for hours. I am spending a lot of time staring into space these days, and not a lot of time where I feel comfortable in groups of people.

And then there are the "positive" symptoms. I talk to myself endlessly. I do this in my car, even though people can see me, and I do it at home, on occasion I catch myself starting to do it in public places.

I have been paranoid about the police following me again. This is a bad sign. This is a familiar sign. Something is very wrong when this happens. I started this thing, again, where people are talking and I think they're talking to me, secretly, or talking about me. It is a sign of psychosis. It has happened to me before many times. I went to a cafe with internet access tonight to work on my research paper, which I cannot work on at home because it's so difficult that, if I'm at home, I'll just give up and retreat to my bed and hide. So in public, I cannot do that, therefore, it is best to go in public to try to write. I stared, and stared at that screen, trying to read that article I was using for my paper, and it was futile for a couple hours. During this time, the people talking to me started. It goes like this: two people are conversing, about whatever they're talking about, and I hear them saying messages meant for me, or about me, that are usually insulting and mean. And that used to happen to me all the time, back when I was floridly psychotic, which was usually back before I was diagnosed and on proper medications. In other words, it should, really, not be happening now, since I am on two antipsychotics, one of which has worked well for most of the past few years.

These are bad signs. I am frankly terrified now. I cannot lose my job. I can definitely not afford to lose my job. Losing my job would mean losing my apartment and my belongings and my cats, and my life. I cannot lose my job. I do not have enough income, without my job, to support myself. And I cannot drop out of college again, either, not after all the work I've done for the past four years to get this far. I cannot give that up. I will not give that up willingly. But how on earth I am going to manage to get through things like writing papers, taking tests, and doing presentations in front of a class, right now, is beyond me. I cannot fathom how that will be possible.

I have done my best to get help for myself. Like I said, I saw my doctor last Tuesday. I did not explain well what was going on, so he increased my Wellbutrin, and I know that will not be enough to help with this. So I sat down and wrote down the symptoms I'm having, and then I got an appointment with my former therapist (the one I cannot afford to see anymore), explaining to her that I was in a bad spot and I really needed to talk to her. I handed her my list of symptoms. She read it and said it sounded like a person with dementia, or Alzheimer's and she thought it was really important that she give this list to my doctor. I guess she did. Then the next day, I went to get my injection, and when the nurse saw me, which he does every two week, he evidently noticed something was really wrong and said that I needed to get back in to see the doctor again, right away. I did not think I would be allowed to do this, because if you try to get too many frequent appointments in psychiatry people tend to label you as an attention seeking malingerer, which I am not, but the nurse went and told the people at the front desk to give me an appointment. So I am going back again on Tuesday.

I do not know what the doctor will be able to do for me, but I want to go off Latuda, and I want to be on a different antipsychotic before things get worse than they already are and I lose everything I've worked for. Tonight I met my mom for dinner (no food to eat at home) and she was telling me to just "snap out of it" and that I was probably thinking about myself too much and feeling sorry for myself. I am thinking about myself because my brain is not working properly and it is seriously impeding my ability to live. I do not feel sorry for myself at all. I cannot possibly "snap out of it", and if I could, I certainly would have done so by now! I hate it when people say such stupid, ignorant things, especially someone who knows me well enough that she knows very well there is no way to snap out of this, and she herself has Bipolar Disorder, so she knows some of what mental illness can do to a person. But I don't have a lot of really understanding people in my family. Oh well.

I do have two friends who are therapists or former therapists, and I have talked to them a little, on the phone or in email, even though it would be easier just to never tell anyone anything about this stuff, because I am desperate here, and I wanted to tell someone, since I didn't know what to do. Now that I have another appointment set with the doctor, I know that I need a medication adjustment and I hope that this will help. Something has got to help.

In the meantime, I must try hard to not give up on the most important things, and work as hard as I can to get to work and to school, and keep up as best I can. Because even though there is no way to snap out of it, I have to force myself to keep going and remain out of the hospital. I must keep my apartment and my job and my ability to live without losing everything.

9 comments:

I am so sorry you are having a difficult time. Don't give up on school and work. Keep going, even if it means doing work and school poorly for now. Poor papers are still papers that get submitted. Poor work happens to everyone at sometime, and most businesses are just glad that something is getting done for the time being. Ignore the "snap out of it" comments, and do what you can for yourself. Don't try to to everything at once. Focus on work and school, and then do one small thing. Clean one dish. Put one thing in a drawer. You don't have to solve it all right now when you feel so badly. I know one of your symptoms is that people are thinking bad things about you. Ignore that. We in the blogosphere are thinking good things about you.

BTW, you write great posts about how people need to invest in infrastructure for the mentally ill. Would you post one to my Blog Carnival? If it is too overwhelming, I might link to one, myself, so no worries.Adventures in Anxiety Land

I hope you're able to see someone soon about this; I can't imagine how frustrating it must be when your symptoms make it harder to talk about your symptoms.

You've worked so hard at your job, your internship, and school (hell I'm neuro-typical and I would struggle to do all those things at once, and keep a clean apt).

Don't give up. I know you can't always trust people to understand what you're going through (or not be a-holes about it), but if you have even one person who could help you stay focused while you're waiting to see your doctor, I would bribe them with candy/love/dinner/etc to help you do some of the stuff that's getting harder.

Also, this might be a helpful idea, if it appeals to you. The link below is a video about a woman who was struggling with recovery from a concussion, (she couldn't think straight, get simple tasks done, study, etc) so she made a game out of it to keep herself going.http://igniteshow.com/videos/jane-concussion-slayer-ep-66

You must have a lot of fortitude and willpower to have made it this far; I'm rooting for you.

You remind me of me when I was on the wrong meds. Not saying that's exactly what you're going through, just that at that time for me I had similar problems of feeling worse and worse and having no idea what was doing it.

Hang in there. Remember that the feelings of hopelessness are part of the sickness. Be gentle with yourself.

Jen, it sounds so lame, but I am truly so sorry. Latuda was suggested to me by a retired psychiatrist who has been helping me, basically since the mental health care I was paying for...fell apart. Latuda does seem to be helping me, but not to the point that I no longer have some of the symptoms you describe..but they have lessened. And Seroquel didn't work so well for me, & I was bone-tired & shaking all the time.

So many of the things you mention here I have experienced. Is there any way you could get an appointment sooner?

I'll admit I am afraid to say anything wrong here, that you might feel will undermine your efforts....but I want you to know I am reading & that I care...~Mary

I understand about fast food and not being able to go to the store when things are bad. Please email me. I live near you and would like to give you some groceries to help you right things. You deserve to have help from people who respect you - no strings attached.

A beautiful flower...

A bit about me and a favorite poem

I'm a 30-something feminist vegetarian quickly becoming a cat lady. I live with Schizoaffective Disorder, formerly diagnosed as Schizophrenia, as well as Sjogren's Syndrome, an autoimmune disease and Fibromyalgia. I love to laugh. I love doing advocacy to create awareness about mental illnesses, and am available for public speaking on this issue. I also love this poem: "On Stripping Bark From Myself" by Alice Walker:
"Besides:
My struggle was always against
an inner darkness: I carry within myself
the only known keys
to my death - to unlock life, or close it shut
forever. A woman who loves wood grains, the colour
yellow
and the sun, I am happy to fight
all outside murderers
as I see I must." I also like this quote by Zora Neale Hurston:
"There is no agony like bearing an untold story inside of you."
Some friends call me Daisybee.